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I hope he finds peace in his life. I can sees that Living with HIV is 50% in my mind, its not all about medication, blood test. We all have to accept that this virus might stay with us until the day we die, and we have to make a life out of it, even thought we have to change everything in life to make that happen.

Believe it or not, I also have two friends in Hawaii who are in the last stages of the disease. They are partners and have fought this thing together for over 25 years. Hospice has been called in which usually means the inevitable. I really wish I could be there with them. Like you, I've lost so many friends, been at the bedside of many, and lots of memorials. Not so much these days, a blessing, but the same sadness comes over me when it happens as it did in the old days.

Many of us that are fortunate enough to become a LTS will have to struggle with trying to find the way to show the newly infected that you can go on to live a full life if you can come to terms and except the responsibility's that comes with living with HIV .

I have had people come into my life who for whatever reason cant or wont except the diagnosis and as time goes on and you see them pretty much stuck in the same place , in denial or just not caring anymore what happens to themselves and its heartbreaking because you know that the disease will eat away at their spirit and eventually the body will follow .

I have that fear from time to time for new members on this forum , its always a wonderful day when they come around and take the next few steps out of fear and back into living again and you know they have a good of a chance as any of us at a happy life , a diffrent life than what they had planned but a good one none the less .

Mark; My condolences, what a sad situation. While I am recently diagnosed, I have been somewhat close to the suffering of this disease a few times over the last 20 years - but nowhere near what others here have witnessed. I am thankful for the treatment that we have today, and would like to see it more available to others that need it too.

Again, I am sorry for your loss and I hope you and his family find peace.

That is a sad story. Obviously there was a masochistic side to his mental illness. Assuming people who stop taking their meds, and start getting sick, are not deluded that some miracle cure is around the corner, then they know they are dying.

A fast suicide has criminal, moral and financial downsides, sometimes so important that suicide is not a option. Maybe someone needs the insurance money, that suicide would nullify, or something like that.

These are very complex situations because one thinks, obviously there should be heavy pressure to treat the mental illness because the mentally unfit person is putting themselves through extended suffering, and burdening everyone, and is effectively committing a long, but legal, "suicide".

Life is mysterious sometimes.

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ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Yes Dale I'm from the US and read English . I simply didn't understand what you wrote and asked for a clarification . I'm the last person on the forum that would be critical of they way people write and wasn't trying to be ugly to you .

I like to see you do my fucking job a kid I didn't think had it in my worst nightmare as far as u concerned you can stop acting like a fag and be a man i'm not sorry for helping him

If you want to discuss issues, that's fine, but name calling will not be tolerated here. You have received responses from two members, asking you to clarify what your comments meant. It's not our fault that you are poz, so stop slamming folks who are only trying to help.

He needn't have. He actually did very well on meds, but he decided he didn't want to take them.

He hadn't been positive all that long (not as long as I and some of the other LTS people have.)

He wasn't having any particular side effects, nor was he suffering from any other physical ailment.

He did have mental health issues, but he would not address them and refused any assistance.

So, he stopped his meds about two years ago. I watched as he wasted, became thinner, weaker and as he became less and less able to care for himself.

I arranged for home hospice for him, because he refused to go into the hospital or nursing home.

It occurred to me that his death process could be a great leaning tool for many of the younger people who are more recently positive.

I have seen hundreds die like this, but most younger people haven't seen anyone die of this horrible collection of diseases.

Ethics, and probably morals, prevailed and I didn't act on this idea, but I do wish others could have seen this.

Then fewer would be complaining about their one pill a day, or the relatively frequent doctor visits, etc.

I am not discounting these concerns, but I would like to put them into perspective, the "big picture," if you would.

Most interestingly, the guy's mother, who was with him the last few days of his life, was actually relieved by her son's passing.

I guess the strain of seeing him as he lay there was more than she was able to deal with for very long.

I can understand why.

HUGS,

Mark

It's very unfortunate that this happened and saddens me that he took this route with the treatment that was available to him today. It must have been difficult for you to watch Mark.... It's definitely a reminder to me how serious this virus is.

Mark, thanks for sharing this with us. I wish things could have been different for him.

Dale, I'm married and with 3 kids myself. The choice you make is, of course, yours to do. But, I can tell you, the progression of this disease will only have one result. It's been proven over the last 3 decades. Also, please refrain from the derogatory remarks towards the members here who are some of the most supportive people I know. Sexuality has nothing to do with anything when it comes to living with this virus.

The member you directed your attack on is one of the most understanding and caring people on this site.

Also.. instead of hijacking this thread any further I would like to suggest that you create your own thread to talk of any issues you are having.

Mark, I apologize to you for taking part in that hijack and won't respond to him further in your thread.

Hopefully Mr Gribble will come back and play nice . If I'm reading what he shared correctly this thread is the a perfect one for a guy like him . I would hate to see him miss out on getting the support he needs to go on and do what he needs to do in order to lead a healthy life .... and thank you skeebo .

Dale, you need to get a grip on your name-calling here and the very large chip on your shoulder. You're free to discuss whatever is on your mind but name calling and other hostile remarks are not permitted.

If you think someone has spoken out of turn to you, report it to the moderators as several have done about your fag comments, etc.

I'm giving you a warning this time. If it happens again it will be at least a time out. Don't lose the benefits you can find on this site by this kind of display again.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

He needn't have. He actually did very well on meds, but he decided he didn't want to take them.

He hadn't been positive all that long (not as long as I and some of the other LTS people have.)

He wasn't having any particular side effects, nor was he suffering from any other physical ailment.

He did have mental health issues, but he would not address them and refused any assistance.

So, he stopped his meds about two years ago. I watched as he wasted, became thinner, weaker and as he became less and less able to care for himself.

I arranged for home hospice for him, because he refused to go into the hospital or nursing home.

It occurred to me that his death process could be a great leaning tool for many of the younger people who are more recently positive.

I have seen hundreds die like this, but most younger people haven't seen anyone die of this horrible collection of diseases.

Ethics, and probably morals, prevailed and I didn't act on this idea, but I do wish others could have seen this.

Then fewer would be complaining about their one pill a day, or the relatively frequent doctor visits, etc.

I am not discounting these concerns, but I would like to put them into perspective, the "big picture," if you would.

Most interestingly, the guy's mother, who was with him the last few days of his life, was actually relieved by her son's passing.

I guess the strain of seeing him as he lay there was more than she was able to deal with for very long.

I can understand why.

HUGS,

Mark

^This should be stickied and linked to the top of the Living With forum.

Thanks for sharing (and posting) this Mark. I'm very sorry for the loss you experienced, but am very happy to see that you still managed to think of how you can benefit others, even in this time. But that was to be expected, as those of us who have come to know you, are aware of how selfless you are. We are very lucky to be honored with your participation in these forums.

Seroconverted: Early 80sTested & confirmed what I already knew: early 90s

Current regimen: Atripla. Last regimen: Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky )Past regimensFun stuff (in the past): HAV/HBV, crypto, shingles, AIDS, PCP

I'm sorry to hear this heartbreaking news Mark. In your job you mentor so many people of all shapes and sizes and do it well. You can't control what everyone does, though you can passionately try to help, as I know you do. Your work is a blessing in this world. Hugs.

Jody

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"Wake up to find out that you are the eyes of the world". "Try to discover that you are the song that the morning brings."

Mark, I am sorry to hear about your friend. It is truly sad that he chose this option, especially considering he didn't have any major issues with the meds or from the virus. But, mental health issues cause people to do things they wouldn't normally do, and mental health often goes unchecked. So, I think it is probably safe to say he didn't "choose" this in his right mind.

At the HIV clinic I go to, I've noticed the docs never ask how I'm doing mentally. I've talked to other patients in the waiting room about this. They all said they've never been asked how they are doing mentally. I had to seek out my own therapist. That's fine for me, but I know many won't speak up, unless they are asked. And, sometimes you have to ask several times, before a patient will open up. I've been telling every doc and nurse I see there that they should always inquire how patients are doing mentally. I believe it should be one of the first questions each visit. From reading other posts here, I don't think many are asked about mental health.

Mark, I'm sorry to hear about your friend. I don't mean this as criticism, but I just don't understand people wanting to quit meds. Certainly, the situation is different if one is suffering from side effects that cause issues. I've heard people say that they 'just didn't know if they could handle taking pills every day.' I guess I've had so many sinus infections, ADHD, etc and have taken pills most of my life that it's a non-issue. Maybe it's the acceptance thing; some people just never come to grips with their having HIV. Personally, getting as sick as I did 6 years ago (within a day of being exactly 6 years) was the wake-up call that I had to get serious about this virus. I knew that if I hadn't gone to my Dr. when I did, I would have soon died, and I wasn't ready for that. Perhaps your friend was just tired of living, but who knows. At any rate, it's very sad for others involved.

Sometimes the very best response we can offer in a situation like this is to live our own life more purposefully, more joyfully, and more fully. This way, despair, never gets the final word and others get a valuable witness in moving forward.

As I am fond of quoting at the end of the AMG memorial service (the words of Pryor at the end of Angels in America) "I bless you all. More life! The great work begins!"

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

No problem, I expected my post to be deleted. I did not post denialist crap, I posted my own comment which was only meant to spark a thought in those who would read it. However, I will not mention it again. Like I said, I did not intend to offend anyone with what I wrote, and it seems obvious I had a good reason to do so.

No problem, I expected my post to be deleted. I did not post denialist crap, I posted my own comment which was only meant to spark a thought in those who would read it. However, I will not mention it again. Like I said, I did not intend to offend anyone with what I wrote, and it seems obvious I had a good reason to do so.

I've been around long enough to recognise when someone is parroting denialist propaganda when I see it.

If you want to go down that road, that is your choice. Just don't expect to use this forum as a means to temp others to follow you into a preventable death from eschewing necessary hiv treatment.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Yes, I have been warned and just to inform you, I was not spouting propaganda. You read my post and I have been on this forum for a while you can see that clearly. However, I will not post anything like it again, don't worry.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I very much appreciated reading what you wrote although I wish the circumstances -- your friends passing -- were different. The thought of stopping meds has crossed my mind every now and then ... a bit of a romantic fantasy, I know. Your words express something important, for I think many of us to reflect upon from time to time, and not just those who are newly diagnosed or the young. Again, my thanks.

...He needn't have. He actually did very well on meds, but he decided he didn't want to take them.

He hadn't been positive all that long (not as long as I and some of the other LTS people have.)

He wasn't having any particular side effects, nor was he suffering from any other physical ailment.

He did have mental health issues, but he would not address them and refused any assistance.

So, he stopped his meds about two years ago...

Hi Mark,

Sad story and I truly sympathize.

I have been confronted with similar situations (older people not able or willing to take their medications)I guess doctors see those kind of cases where some people will not want to take medicine for religious or other beliefs.It must be tearing people's heart including the health care providers

The following question means no offence, but, I wonder... Don't hospital nurse or families have the right to 'crush the meds' and mix with food ?

We do it to our pets, don't we.

Do we have to place free will above life ?

Because of families or friends, we, lay people are sometime caught in contradictory situations that we have not been prepared to

Anyway thanks for reminding us that ranting about the mere number of pills or their color is futile

I was marked as being gay , which i'm not5 kids and a loving wife I stopped taking the meds I want to beat it. 4 months and still going strong

Awesome that your going strong. I'm bad off now, but starting complera my brother. Let's hope this medication works cause taking 3-5 pills with my stomach and esophagus problems this one a day pill should be a diamond in my life and help me live a normal life

I hope he finds peace in his life. I can sees that Living with HIV is 50% in my mind, its not all about medication, blood test. We all have to accept that this virus might stay with us until the day we die, and we have to make a life out of it, even thought we have to change everything in life to make that happen.

Sorry to hear about your friend Mark. RIP.I agree with Anqueetas that Living with HIV is 50% in mind or I would say even more. We have to change ourselves, our lifestyle, behaviours, attitude etc and be strong and fight this till the end. Never give up hope. Its like running a Marathon. Along with physical ability to run long distance.. it's the strong mind that keeps on the run long facing all the obstacles. The moment you think its enough, you stop, give up and you loose the run and fail to reach the target place. We should be strong physically and mentally to battel HIV come what ever obstacles..

I was unaware of this thread, until reading about it in "Letters" in the latest POZ magazine. (I'm rarely in the Living With forum, I pretty much hang out in LTS).

A real tragedy; it is especially heartbreaking for those of us who have seen family, friends and loved ones die because there was NOTHING available to help them. It almost happened to me; thank God the protease drugs came along in 1996, and Saquinavir saved my life.

I'm not sure why someone would choose not to take meds; then again, I'm not sure why people do (or don't do) a lot of the things that go on nowadays. I hope I don't reach the point where I feel as if I don't have anything left to live for. I know, first-hand, what it is like to die from AIDS, and there is nothing good about it.

May we all find the peace we need, in whatever form that takes in each of our lives.

Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Mark, My sincerest condolences. This is a difficult situation to endure.

I have a friend in Philly in this same situation - he was diagnosed twelve years ago and has refused to take meds. While I am not privilege to his exact numbers I know they are low as he has been in the ICU for three weeks of the last eight. He has also been showing signs of HIV related dementia - calling me to talk and then a bit in to the conversation saying he doesn't know who I m and hanging up. He is only 29.

I have had the same idea about the film making , the balance between ensuring conditions are maximised so that folk get tested and the fact that HIV care has moved on forward blinds people to the er illness part , which off course is still here.

Your other post about the provision off HIV care in your area could also make a interesting Documentary. in fact Mark maybe you should be the subject then loads off issues will get aired. Plus your Fan club will soar. Which at least would be fair.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Very sad story, Mark. Hiv is the nastiest staff that an individual can get. It is really so much nasty. However, it requires one to be the most strong to live with. Anyone can live the most with treatment. Just only realize that it is treatable.

The story reminds of mine that I refused to take treatment for almost eight years and finally end up onto my death bed until I get into treatment which I am now on the top. From the first day of my treatment onwards I believed that I will be living life to the fullest possible with treatment. I work almost 12 to 14 hours everyday not to remember this nastiest virus I am living with.